Wednesday, February 29, 2012

The phases of lupus - thank goodness there are some!

Phase [feyz] - astageinaprocessofchangeordevelopment.

Oh yeah. That pretty much describes it. At three years of age, Deirdre has mastered the art of change and development. And as far as "phases" go, we've seen our fair share of them since her birthday last October. She is constantly growing - emotionally, mentally, and physically - and tell you the truth, sometimes, it's hard to keep up.

Of course, I love my little lady bug. She's my favorite first baby ever, and she's perfect in every way. It's just that I wish a few of her phases could have been shorter rather than longer.

I don't think I'm jinxing myself when I say that we're successfully over the 3 to 3 1/2 year old Independent phase, and we've recently conquered the Resistance to the Afternoon Nap phase. Notice I'm not so naive as to believe there won't be a 3 1/2 to 4 year independent phase, or a Reluctance to Nap phase ...but since she's a whole month shy of 3 and 1/2, and she's currently napping like a champ...I'm going to celebrate my little victories as long as I can.

And there have been so many of them. In fact, I was at lunch with some girlfriends last month, and I was seeking advice on quelling the 5-10 minute tantrum Deirdre was throwing at nap time. Like good friends, they replied, "Five to ten minutes? You're so lucky. Our kids go on for 30 minutes." Nice, right?

Of course, during that same conversation, one of my friends asked how Deirdre was at bedtime, and I naively replied, "She's fabulous. Why?" My girlfriend went on to describe the difficulty her girls had going to bed and staying in bed...and the peppering of questions to get up to go potty, get a drink of water, etc. etc. Well - Deirdre had never done any of those things...until now. Consider this new phase "on."

And yet, the good news is that for every challenging phase there's a distinct beginning...and a glorious end. Just like lupus. A flare does not last forever, despite what most of us may think come week three or month five of active disease. There are ups and downs - and having had some very down moments in my time, I can promise you that I never, ever believed I would experience the long, consistent string of ups that I do today.

But that's why I have to stick with my story that life with lupus CAN improve. The emotional and physical pain that you experience really can fall by the wayside, given the right treatment, time, and attention. And ever so slowly you can begin to rebuild your life, despite your chronic illness. As I mentioned to a representative from HGS (Humane Genome Sciences) recently, it just seems to take a whole book's work of effort! (Hint, hint!)

11 comments:

Anonymous
said...

Sara, Thank you for your note today that reminds me to focus on the positve phases of each day - even while living with Lupus. I'm new to your site, have your book and am grateful for finding this this particular community.

I was dx'd with Lupus a number of years ago and have struggled to accept the fullness of the dx. As a nurse, my solution has been to fight through any and all symptoms associated with the disease. After reading your book, it finally dawned on me that I am only harming myself in many ways. I am currently on Placquenil and low dose Prednisone. It has been difficult for me to be honest with my doctor regarding the daily pain, swelling, etc. (I am a nurse - which presents challenges of it's own) I think he has seen through that smoke-screen and wants to put me on CellCept. I have great concerns about the RX but am also encouraged by some of the postings here. I would appreciate input. Thanks so much.

Too true!This time last year I was in a horrible flare that didn't seem to be easing at all. To top it all off, I had both my diagnosis and treatment retracted and stopped even though I was using crutches and painkillers to get around.

Now, I'm not only diagnosed, but have been well enough to start work again and I haven't needed my crutches since May, all thanks to learning how to look after myself. True, I've had to start back on Celebrex but, you know what, who cares? It means I can get out of bed in the mornings and be on my feet most of day usually without too much swelling.

I'll never forget the bit in your book where you mention about determining the 3 things you want to achieve and the 3 things standing in your way. That was the turning point for me I reckon.

To the anonymous nurse - You know that I was an expert at fighting through my symptoms, and I'm so happy to hear that you've been able to take a step back and see how unproductive that can be. And being honest with one's doctor is tricky for most lupus patients, but as professional peers, it must be a whole different ballgame. I'm sure your knowledge presents problems - but hopefully, you'll be able to put it to your advantage, maybe even in regard to the Cellcept. On that subject - as you know, there's no right answer. It's really up to the patient to determine what treatment you're willing to undergo. That said, I know it really helped me to jot down my personal issues with the drug (because I had some, too), and then evaluate the validity of my concerns - based on facts, research, and a little soul searching. Once I did my list - I was very surprised how little credibility/logic some of my issues had. And then when I weighed the import of my remaining concern(s) against the value of starting the drug, my answer became clear.

And as a nurse, perhaps you can use the information and experience you've gained over the years watching other patients make, what you would consider, good decisions re: treatment to help make yours. Just like all of us do, you'll probably have to filter those experiences - but ideally you can balance the emotional strings (b/c it is YOU were talking about!) with the practical side of things in order to come to a satisfactory conclusion.

My hope is that you'll find clarity as well - at least enough to satisfy yourself with a decision, be it yes or no!

Aymie - What a fabulous story to share! Seriously - you just never know what's in store...and I'm so happy to hear that the "Three things" hit home for you. Not only am I thrilled that you were able to use it as a catalyst for moving forward, I'm so tickled that you "got" the concept of applying those three things to you personally. The whole exercise is designed for the individual, and while I cite my three things as guidelines, the idea is that you come up with whatever areas of your life need to be re-evaluated. A totally tailored exercise - and you got it, applied it, and look at you now. Minus crutches! So happy you shared your successes. You get the living well star for the day. :)

Sara, Thank you for your insights and wisdom. I will attempt to follow your suggestions regarding the CellCept. I continue to read your book and am finding that emotionally, I am trying to catch up with the reality of the Lupus. I have managed to deny, rather effectively, the symptoms,flares, pain, and limitations for the past five years. I feel that as I seek some clarity, I am also trying to find ways to be accepting of myself and the disease. IT is a bit of a parallel tracking. For your information, this is the first time that I have shared with anyone, other than my husband. That MUST make you and this site very special. Thank you for being there.

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Sara Gorman

In 2001, I was diagnosed with systemic lupus, at the age of 26. I had been married less than 6 weeks and was at a highpoint in my career in television production. While I fought to keep hold of the life I'd known - demanding, yet fulfilling career, busy social life, packed vacation schedule - after four years of running my body into the ground, I realized I was fighting life, not living it. Thus, I downshifted almost every aspect of my life. I let go of my career and made it my number one priority to get myself back in good health. I'm proud to say that I've reached my goal, but work each day to maintain that healthy lifestyle. despite lupus. My book details the steps it took to reach that goal. A native of Indiana and graduate of the University of Notre Dame, I reside in Alexandria, Virginia with my husband, two young daughters, and pug dog.